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Tillie and all - today was not a good day. I woke up this morning after a much needed night out dancing with friends and boyfriend and went to go give mom her formula. In my half-dazed state, i could see that she wasn't feeling well. She said that she's still in pain, more than expected, and didn't sleep well last night. She said that she's regretting getting the PEG because it adds another complication to life and makes her entirely dependent on me for food. Plus, there are other little things like making sure that I'm there to help her cover the dressing so that she can shower, when before she was able to shower on her own (although now wants me to be home when she does it, as she's worried she might not be able to get up).

I was on my way out to go to my first NFL football game and felt so guilty about leaving her in bad spirits. I feel like I'm doing a crappy job taking care of her, a crappy job at my job, and a mixed job taking care of myself and my relationships. I started worrying so much that I gave myself a full blown panic attack in the car that lasted almost an hour, complete with hyperventilating, sobbing, tunnel vision, face flushing, and full body tingles. Thank goodness for meds and those people that you can call who understand what's going on and are patient and listen to you.

During my sobbing conversation with one such person I came to the realization that I need help. I can't do all of this alone. Something has got to give! And I'm not sure what. What a damn roller coaster this disease is.
 
If she is still in pain tomorrow can you get her checked over? Sometimes the peg is a bit tight and a simple loosening could be an answer. It may not be, but it is worth checking.

I'm sure she is saying these things because she feels so bad. PALS can still take in anything by mouth after peg placement, so if she can tolerate drinking shakes or eating puree she can still do this.

Are her hands too weak to do a peg feed herself?

If you feel you are failing as a CALS, it's time to sit down and evaluate all that you are doing and be reminded that being a CALS is a huge job, and none of us are really trained for it, we are suddenly thrown into it and we learn as we run along.

Then look at all that you do, and be really honest with yourself and say - what would I most like help with? The CALS here all get help with a differing variety of things, depending on what works best for them. You figure out what will help you most, then you have something definite to work towards finding a way to fill that need.

I realise that a part of this may depend on what your mum will accept help with. Sometimes there is a clash between what the CALS wants help with and what the PALS will accept being done. So once you can figure what you want, you can use this to have a conversation with your mum about how she feels about it all.

Try to approach it as wanting to ensure she is making the decisions with you, and that it is to ensure that you both are getting what you need.

CALS who do not get any break for themselves often burn out quickly, I hope your mum can understand this without feeling this means she is a burden. That's often a fine line. We are CALS because we want to look after the one we love, but we are human and can't do everything. That's where really figuring what will help you most becomes really important.
 
So sorry this is so hard peacecomesfromwithin. I think Tillies right, she is saying these things because she is in pain. It will get better. My PALS had problems with the bolster being too tight. The GI Specialist showed us how to loosen it. Also, we don't have a dressing covering it. The dr told us it is better to leave it uncovered?! It was only covered the first day to keep from getting anything on his clothes. He showers, cleans it and tapes it to his stomach. I hope things get better soon. Hugs!
 
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